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Everything I haven’t told you….including the truths about my Lyme and insurance

Insurance is supposed to be a safety net, right? If you have cancer, get hurt, learn there is something wrong with your brain or your heart or your kids, then yes. But if you have Lyme, the reality is the net has a huge hole in it.

Let me take you back. Over two years ago I was happily married and working full-time to do the job I planned to have after graduating (marketing and graphic design). My work saw so much potential in me they promoted me and gave me the job without my BA. I was stoked. I was also taking full-time classes (some online and some night classes) so I could obtain the degree that I’d already been promoted for. I was living in an adorable house with our fur babies (dogs) and I had the man of my dreams going to school to be a firefighter paramedic, which was totally sexy to me. I was living the American dream and I was so happy.

From a distance that sounds wonderful, right? Well, sort of. All along while I was working and going to school and being a wife, I had a war going on inside of my body. I had no idea what was happening inside of me. I made accommodations so I could live with the strange symptoms that no doctors had answers for.

My back, neck and sides were all affected.

It all started when I had bizarre sensations to touch, mostly on my back. I found out that by layering a few shirts and taking a couple of doctor prescribed medications, I could live with my extremely sensitive back. But I avoided hugging people and was keenly aware of every door handle or woman’s purse that I could accidentally be nudged into. This would instantly result in me breaking into tears and my whole body in shock from the pain in my back. Doing marketing and being invited to many social events where I was “on” ready to shake hands and introduce the company I represented, and bending over backward to impress a potential client, I faced this purse, door-handle and hugging situation often. My pain wasn’t ideal, but I could cope. I’d been living with it for a long time and I knew the sensation was getting worse, but I’d been proactive going to every specialist I could get into. No one had any answers so I just went on with my life hoping I’d find an answer before it took over my body. The sensitive area started out under my shoulder blades in 9th grade and over the course of eight years had spread up my neck, down my lower back and was now creeping forward to the front of my torso.

While the pain in my back was slowly taking over the majority of my body, I had another lovely strange thing happen to me. Before we were married, Justin and I were heading out to his aunt and uncles house for dinner. It was about a twenty-minute drive and I was looking forward to seeing everyone. It was getting dark outside and I was suddenly very sensitive to the headlights from everyone’s cars. I remember getting very sick in the car and even threw up next to a bunch of mailboxes in their neighborhood. I had no clue what had come over me and my eyes weren’t really the same after that. We ended up going to the ER where I was told I had a headache. Awesome. I couldn’t identify colors for them, but after an MRI and blood work, I was sent home with my “headache” and a referral to a Neuro-Ophthalmologist. I’d been to other neurologists in the area but only for my back issue and I was optimistic that someone would be able to help me. I made a point to only talk to this doctor about what was going on with my eyes because I knew he specialized in this area and at this time I had no reason to think my back pain and eye issue were at all related.

This doctor was amazing and two appointments later he diagnosed my eyes with _____. It was simple; my optic nerve had disconnected slightly which caused each of my eyes unable to track together. No wonder I couldn’t tell if cars were driving in the lane next to me or merging at me! It was so simple once he figured it out to demonstrate it to my mom and fiancé, who came with me to the appointment. The doctor would have me follow his finger with my eyes. As I followed his finger from right to left and left to right my right eye would stall and sort of bounce up and down and then continue following the finger along with my other eye. I remember my mom and Justin standing close to me staring at my eyes as I followed his finger they said in unison, “Oohhh!” They could easily see what I had been trying desperately to describe but couldn’t. My eyes weren’t working together. Sweet. I had another prescription to dumb down the nerves in my eyes and I had an actual diagnosis. Unfortunately, there was no reason or cause for this to happen and there wasn’t much I could do about it. I had some optic nerve damage but nothing that should interfere with my life too much once I got the medication in my system. Between the time of the ER visit and getting the medicine to help my eyes, I had stopped driving. It was impossible to drive with my eyes not tracking together. This was an extra complication in my life and required a bit of assistance from my roommates, fiancé, coworkers and teachers. But it was short lived and I returned to my life. I continued to plan my wedding, go to school, go to work, and manage my symptoms.

The medications I’d been given by a few doctors seemed to help the pain in my back and my eyes, but it was calming down my nerves, which calmed down my brain, making me very tired. I would sleep forever if my schedule would permit, but I had places to go, people to see and bills to pay. I remember my roommates making comments about how much I slept, but I didn’t know what else to do. So I missed out on a lot of late nights of laughter and other fun things that come when living with all girls.

In 2008, Justin and I got married and my symptoms remained the same. I was still on medication and required a lot of sleep, but it had become my normal so we just lived with my quirky health issues. I had continued going to the doctor and the eventual referral to a specialist, but it always left me at a dead end where I felt a little more crazy. No doctor could tell me what was going on with my body and neither could I.

My life continued and was practically perfect, but like I mentioned earlier, I had a war going on inside of me. I had a bacteria slowly reproducing and invading my neurological system while drilling into every muscle, tissue and organ of my being. I had no clue. I had only the gut feeling that something was going on deep inside of me. If I couldn’t figure it out, eventually, I would be bed bound, confined to my house, unable to wear clothing due to my pain spreading and taking over me. I spent hours online trying to find some answers but my searching just left me more confused.

Around the end of summer in 2010 I went to another neurologist on referral from my doctor, hoping this one would recognize my symptoms and give me a real diagnosis. This lovely doctor was so kind to crush all my dreams and tell me I would never be able to have children because of all the medications I was on. I was crushed. I arranged a private time to talk to each of my parents and let them know I wouldn’t be able to give them grandchildren. I had been married for two years and always spoke of my dream to be a mom, so I’m pretty sure they were expecting me to tell them I was pregnant, but not this. My parents had always known of my pain and strange symptoms, but didn’t really realize the extremeness of it all until this conversation. It was at this point that each of my parents busted out their superhero costumes and told me we couldn’t give up based on what this one doctor told me. We wouldn’t stop until we had a true answer to what was going on with my body. We would travel to UC Davis or the Mayo Clinic to have more specialists look at me. Nothing would stop my mom, dad, step-mom and step-dad from finding some true answers! It was amazing. I had pretty much given up on this fight. After all, I’d been seeing doctors for years with no leads or ideas at what was happening to me. I was defeated, but my parents (all of them) had a fresh fire under them and they were fueled to find an answer. Within days they had gotten me referrals to a few major medical teaching hospitals and our plan was to go to the soonest appointments I could get. It was weeks and months before I would be able to be seen by anyone at these places, but my mom and stepmom both had these “amazing doctors who diagnosed someone with a strange condition” so I agreed to go to one appointment for each of them. I was doing it to appease them, not because I actually thought I would get a diagnosis. After all, I knew practically every doctor in Northern Nevada and no one had helped me, so I had little hope in them.

I was able to get into one of the doctors very quickly. I had assembled a binder of all my medical records and a timeline of my symptoms (all for UC Davis and the Mayo Clinic) but I decided to bring it, just in case. Dr. A walked in and I started telling her I’d been to all these doctors and no one could diagnose me, as I handed her my timeline and waited for her to write me off like every other doctor. She sat down and waited for me to stop talking. She looked at me and said, “Elizabeth, I want to do some blood work, but I think you have Lyme disease.”

I looked up and locked eyes with her, choking back tears, “What’s that?” She started to educate me about Lyme disease and how it is from a tick but not many people know if they get bitten or when. She asked me if I’d ever had a bulls-eye rash, and I denied it. She kept telling me it was normal that not everyone gets one, and if people do they don’t always see it or recognize, especially it if it is on the head covered in hair. She told me that my story was not uncommon from people with Lyme disease. So many people display bizarre symptoms that get worse over a long period of time. So many people go for a long time without a diagnosis. With Lyme disease you can’t look for a specific symptom, but you look for neurological type symptoms. My pain, my sensitivity to touch, and my optic nerve disconnecting were neurological based! I couldn’t believe my ears! She actually had an answer to all my weirdness! I had tears streaming from my face. I was so relieved to have a name and a reason behind everything I’d been experiencing! She had enough medical information to prescribe me an antibiotic and start my Lyme treatment that day: November 9, 2010. Finally, an answer! I was not making it up! It was not all in my head! What a relief!

Dr. A sent me home with a lab work kit that would be sent to a specialty lab to confirm my diagnosis. My symptoms started years ago, which technically qualified me to be diagnosed as Chronic Lyme Disease. Regular lab work through LabCorp or Quest would only give me a positive diagnosis if I had recently been infected (like within the last couple weeks). My first month of treatment was rough. I tried to maintain my life but within a few days I was clearly very sick, I know now was from killing all the bugs who were hard at work taking over my body. I took a medical leave from work and could barely lift my head off my pillow. I was living in my charming house with my husband and my superhero parents were an hour away. I think they were feeling pretty good because within a couple months they had already scored me my diagnosis and started me on my treatment. None of us realized what this diagnosis meant for me. I lost over ten pounds in a month. I could barely eat. I called my mom from my bed and told her I didn’t have anything I could eat. She thought I meant I couldn’t afford to go grocery shopping so she offered to pay for my groceries and I should just run to the store. I clarified for her that I literally couldn’t think of anything to eat and I was really sick. “Oh, sweetie.” I imagine her saying this and wanting to run and snuggle me until I felt better, but she was busy at work and couldn’t get to me for hours. That is the last memory I have before I remember waking up in my dad’s house while Justin was on a medical internship in Peru. He didn’t plan on leaving me right when I got my diagnosis; this trip had been planned and saved for, for a long time. I was in good hands with my parents, so he felt okay leaving me to treat sick children in Peru. I really couldn’t say no and have him stay! I felt like I was experiencing a bump in the road and I’d be better by the time he got back to the country a couple weeks later. I was so wrong.

He returned just before Christmas and it was clear to him and my parents that I wasn’t moving back to Reno. I required more care than he could give me, and it made much more sense to have all of my parents (and some loving and concerned family and friends) checking on me and staying with me nearly 24/7. Justin had work in Reno and we were in a contract to rent our house until May so he stayed at our house in Reno and he would drive down to see me as often as he could. I was sleeping about 20 hours each day and had to be helped multiple times each day to eat and take my medicine. It wasn’t unusual for him to drive down to see me only to spend the time studying and catching up on any changes with me from my parents, while I just slept.

Eventually, we contacted our kind and understanding landlord who let us out of our lease early and Justin moved to Minden with me. We had quite a tailspin from being on our own, happily married, to getting my diagnosis and starting treatment. Nearly overnight Justin’s medical training and experience became essential in guiding and directing my care. He was my husband but also the person directing my care from the home front. His expertise really came in handy when my doctors determined I was a candidate to do my infusions by IV instead of taking them orally. So we were living with my parents and life had changed in a big way. I couldn’t even shower without supervision and a shower chair! I was so weak! I have very few memories from that time. All I know is it was extremely hard for my parents to watch me go through my treatment but they didn’t want me to be anywhere, but living in one of their houses taking good care of me.

I know Dr. A briefly mentioned it, but I only began to understand what a long and expensive journey this would be. The initial blood test was around $900 and not covered by insurance. I also started seeing a Lyme specialist who didn’t accept insurance. I’ve learned the dirty truth that insurance dictates the care a doctor is allowed to give. By my doctor not taking insurance it allows him to treat me based on his schooling, medical research and years of expertise to care for patients. If my doctor accepted insurance he would be limited to treat chronically ill Lyme patients like me, with 2-4 weeks of antibiotics, and a pat on the back for all the symptoms that were still hanging around and not given the time to be treated. In my case, I’ve had eight years of symptoms slowly taking over my body as the Lyme bacteria (Borrelia burgdorferi) slowly reproduced. Because of its spiral shape, it would drill into every fiber of my muscles, tissues, and organs. Eight years of infestation can’t be treated in two to four weeks! The antibiotics don’t work like the Hiroshima bomb taking out everything in sight (thank God, or I’d be dead too).

Instead, the antibiotics work by targeting the bacteria to mess with their evil plan to destroy my body. The antibiotic is the good guy in my treatment, but part of it trying to destroy and kill the bacteria has some negative side effects for the body housing this war (aka me). But, the bacteria are smart and can adapt to a certain antibiotic becoming resistant to its power. So my doctor has to be ahead of the bacteria and switch up my medications often before they become resistant.

The only CDC approved treatment for all patients diagnosed with Lyme disease, thus the only treatment insurance will pay for, is very similar to the Revolutionary War strategy of the Red Coats. They used the same attack time after time and they got shot down time after time. Stand in a line; get shot down. Send new people to stand in the same line to get shot down again. There is no change in strategy, and no adjusting for attacking the other side, just the same line up no matter what. This war strategy didn’t work well for the Red Coats and it hasn’t worked well for anyone who struggled to get their Lyme diagnosis. This strategy just doesn’t work, but this is what the CDC has approved for ALL Lyme treatments (immediate diagnosis AND chronic diagnosis).

The Americans continuously changed their plan and strategy to better attack to win the war. Just like my Lyme specialist who switches out antibiotics to best kill off the Lyme bacteria. It takes a long time to eradicate the Lyme from a body, especially after its been growing and reproducing freely for 8+ years.

Then, to make things even more complicated, it’s time to tell you about co-infections that travel with the Lyme bacteria. When the tick initially burrows into the skin, it backwashes bacteria into the body while filling up their bellies with blood. What the tick leaves behind often is not only the Lyme bacteria, but also co-infections, which are other bacteria, viruses and parasites, that complicate treatment. For me, I was given the Lyme bacteria, as well as the co-infections Babesia (similar to Malaria) and Bartonella (often called Cat Scratch Disease).

It is unknown to me if I also contracted parasites from the tick, or when my system was compromised from all these buggers. All I know is my body became a perfect home to many unwelcome visitors that I learned about YEARS later when I got my Lyme diagnosis and started testing for the co-infections. I didn’t know I had parasites in me until they started evacuating my body! That was a big surprise to see in my toilet! I had urinated a parasite that was still alive! I watched the nasty surprise swim down my toilet! The bugger was about three inches long and dark in color. It reminded me of a garden worm. It was that day I began saying the phrase “better out than in!”

Since that time I have physically seen three other species come out of me. They all look very different and each species was a different color, shape and size than the last one I found. Some I’ve been able to capture and send in for testing and others I haven’t been able to collect. If this is interesting to you search “parasites” on my blog and you can read all about my adventures with parasites.

Overall, the picture I want you to see is I truly am a victim to Lyme (and its accompanying friends). I was contributing to society, working full-time, and going to school full-time; living the American dream. I was proactive about seeking healthcare and went to every referral I could to find an answer for my strange symptoms. Before I started having symptoms at age 14, I lived in Minden, NV. Not an area or a state that is recognized by the CDC to have any reports of Lyme disease. I’d never been to the East coast. I was a fairly healthy child. I played soccer in the fall, but, overall, I didn’t spend a ton of time outside. My family wasn’t into camping much and I had never seen a tick before. I honestly consider myself the poster-child of who-was-not-at-any-risk for getting Lyme disease. But, alas, I got it anyway.

I started this posting talking about insurance and I want to bring you back to that point. I didn’t feel like I could make my point without letting you know everything I’ve been through. I’ve always thought of insurance as a safety net. But this safety net has failed me because of my diagnosis. I followed every step I was supposed to. If I had cancer instead of Lyme, I would be treated at Center for Hope or some other treatment center where insurance would cover my treatment. When my dad had heart surgery, insurance covered nearly everything for his procedure at Stanford University. But because I have Lyme there is no real coverage by insurance.

I do need to disclose to you that I was very fortunate the first fourteen months of my treatment. My insurance did cover my prescriptions, my infusions, my home care nurse, all seven of my picc-lines and my port for IV access. But after fourteen months they had a change in their policies and decided not to cover my treatment any more. To this day they only pay for my prescriptions at the regular pharmacy, and not all of them are covered. I was already paying out of pocket for all my doctors appointments, holistic treatments, homeopathic drops, supplements, additional specialty blood work and stool samples. I complement my Western medicine treatment with Eastern medicine to build up my body while the antibiotics were hard at work killing the bacteria and other critters inside me. So for the last ten months it has been by the support of my family to pay for everything (I’m so grateful to have the family I do). I hate to even guess at how much this entire treatment has cost us because the thought of it breaks my heart. But so far my stab in the dark guess is somewhere between $60k-$90k and this is my running total. I am still not done with my treatment. In fact, I have probably another year to go. From what I understand a typical chronic Lyme treatment with no financial restrictions is about three years. So I am roughly 2/3 of the way through!

If you have cancer or get hurt or learn you have something wrong with your brain or your heart or your kids, then yes, insurance exists to protect you and your loved ones, but if you have Lyme, the reality is the net has a huge hole in it. I didn’t do anything to choose this diagnosis. I followed all of my doctors’ instructions and sought after the best care to help me get better, just like anyone would do with any life-threatening disease. I had a job provided me insurance and I never had a lapse in coverage. I didn’t have a pre-existing condition or any other thing that could be said to deny me support from my insurance company. Because I don’t have the support of my safety net anymore, my treatment goes on a week-to-week basis. My family has all offered financial support, but the resources are not endless. I only hope I finish my treatment before the resources run dry. It’s a scary place to be and it doesn’t make sense to me that I have to go into big debt or ask my family to help me pay for my treatment when I did everything I was supposed to. Insurance exists to protect people like me from situations like this. I really don’t understand why the “safety net” doesn’t apply for me just because my testing revealed Lyme disease and not cancer.

3 thoughts on “Everything I haven’t told you….including the truths about my Lyme and insurance”

I am astounded at how little Infectious Disease Specialist know about Lyme Disease and how they have allowed the insurance companies to insert themselves into the decision making of how to appropriately treat Lyme. It is also ironic that most doctors fully understand that syphilis is a deadly spirrocete bacteria that can invade the brain and once there is extremely difficult to eradicate, yet they close their minds to accepting that Lyme, also a spirocete bacteria, can do the same! It is infuriating, to say the least. I'll be praying for you that the funds hold out until you can finish your treatment and be CURED of Lyme!